Fatigue and Breathlessness in LongCOVID - UK Zoom Panel with Physios for ME and Dr Sue Pemberton

[livinglighter]

Yesterday I made a thread/post about current NHS Long Covid clinic findings.
https://forums.phoenixrising.me/thr...ng-patients-with-neurological-symptoms.83800/

Today I came across another video with ME specialist Dr Sue Pemberton who heads the Yorkshire Fatigue Clinic, which is the only clinic I know so far that outrightly says they follow the Dysregulation model.

You can self-fund therapy at YFC if you are not from the local or nearby area. I checked and was told the therapists could signpost patients presenting conditions like POTS (but confirm this to be sure if you are interested in attending via skype or in-person).

In the video, both Dr Sue Pemberton and Natalie from Physios for ME link both ME/CFS and Long Covid during the discussion. After watching this video, I'm definitely buying a heart rate monitor to investigate abnormalities. I only heard of both Dr Sue Pemberton and Physios for ME this year following the Long Covid outbreak.

I think it's a good idea to watch the other videos on the channel as well.

 

[ljimbo423]

Today I came across another video with ME specialist Dr Sue Pemberton who heads the Yorkshire Fatigue Clinic, which is the only clinic I know so far that outrightly says they follow the Dysregulation model.

Thanks for the post. I just want to put a link here to the Yorkshire Fatigue Clinic's "Dysregulation Model".

I'm looking at it now. It's very symptom detailed and informative. I'm finding it very validating for my symptoms.

 

[ljimbo423]

@ljimbo423 I did notice there seemed to be a bit of hesitance in agreeing with the Long Covid patient that the shared symptoms with ME are not due to deconditioning.........

That's interesting. My feeling is many patients with Long Covid have ME/CFS. I hope they listen to the Long Covid patients and learn that there symptoms are not due to deconditioning.

 

[Pyrrhus]

Today I came across another video with ME specialist Dr Sue Pemberton who heads the Yorkshire Fatigue Clinic, which is the only clinic I know so far that outrightly says they follow the Dysregulation model.

Do you have personal experience with the Yorkshire Fatigue Clinic?
If so, what has your experience been?
Are they an official NHS clinic?

Thanks for the post. I just want to put a link here to the Yorkshire Fatigue Clinic's "Dysregulation Model".

Please allow me to gripe about a rather insignificant detail:

The autonomic nervous system has perhaps hundreds of stored programs of autonomic responses to various environmental conditions.

It is way past time to stop trying to describe all these various autonomic responses in terms of "sympathetic" or "parasympathetic", just because those two autonomic responses happened to be the first ones to be elucidated...

 

[ljimbo423]

Please allow me to gripe about a rather insignificant detail:

Having read enough of your posts to understand that you must have good reason for your gripes, please feel free to do so.

It is way past time to stop trying to describe all these various autonomic responses in terms of "sympathetic" or "parasympathetic", just because those two autonomic responses happened to be the first ones to be elucidated...

So there are other autonomic responses beyond those two? Could you explain a little?

 

[Pyrrhus]

So there are other autonomic responses beyond those two? Could you explain a little?

Other programmed autonomic responses to environmental conditions include:

• The body's response to heat, such as sweating and flushing
• The body's response to cold, such as shivering and blanching
• The body's response to going from sitting to standing, which is impaired in orthostatic intolerance
• Sexual arousal, which shares some nervous pathways with the parasympathetic response
• Orgasm, which shares some nervous pathways with the sympathetic response
• etc.

I could go on, but I'm already off-topic.

 

[livinglighter]

That's interesting. My feeling is many patients with Long Covid have ME/CFS. I hope they listen to the Long Covid patients and learn that there symptoms are not due to deconditioning.

I ended up deleting my comment probably while you were responding, as it was a minor observation. What I meant was to me, it sounds like the Long Covid patients symptoms are being validated, but when Sue and Natalie explained and linked similarities to ME/CFS. The Long Covid patient being very much aware of the difficulties pwME face, felt it necessary to declare the similar clinical picture is not a result of deconditioning. I just noticed all the medical professional on the call didn't verbally agree as well.

 

[livinglighter]

Do you have personal experience with the Yorkshire Fatigue Clinic?
If so, what has your experience been?
Are they an official NHS clinic?

I don't have personal experience with the Yorkshire Fatigue Clinic. From my current knowledge, the current founder used to run an official NHS clinic set up in the '90s, however, she decided to leave the post when changes were made and set up the Yorkshire fatigue clinic, which is now a contracted provider for NHS assessment and rehabilitation for patients with CFS/ME in North Yorkshire, excluding adults in the Harrogate and rural area.

There are one or two old posts on the forum about the service/staff who've worked there.

 

[livinglighter]

Other programmed autonomic responses to environmental conditions include:

• The body's response to heat, such as sweating and flushing
• The body's response to cold, such as shivering and blanching
• The body's response to going from sitting to standing, which is impaired in orthostatic intolerance
• Sexual arousal, which shares some nervous pathways with the parasympathetic response
• Orgasm, which shares some nervous pathways with the sympathetic response
• etc.

I could go on, but I'm already off-topic.

Thanks for clarifying this, but I'm still a little unsure what you are saying. Do you mean, for example, difficulty regulating temperature, which is often found in pwME, is not a result of parasympathetic or sympathetic dysregulation?

 

[Pyrrhus]

Thanks for clarifying this, but I'm still a little unsure what you are saying. Do you mean, for example, difficulty regulating temperature, which is often found in pwME, is not a result of parasympathetic or sympathetic dysregulation?

That's correct. Difficulty regulating temperature can be due to dysautonomia (AKA autonomic dysfunction) but it's not directly related to the "fight or flight" sympathetic response nor the "rest and digest" parasympathetic response.

I hope that's clear.

 

[Rvanson]

I ended up deleting my comment probably while you were responding, as it was a minor observation. What I meant was to me, it sounds like the Long Covid patients symptoms are being validated, but when Sue and Natalie explained and linked similarities to ME/CFS. The Long Covid patient being very much aware of the difficulties pwME face, felt it necessary to declare the similar clinical picture is not a result of deconditioning. I just noticed all the medical professional on the call didn't verbally agree as well.

No one cares about us. They never did. Covid wont change that.

 

[Treeman]

Do you have personal experience with the Yorkshire Fatigue Clinic?
If so, what has your experience been?
Are they an official NHS clinic?

Hi, I'm a patient at the Yorkshire Fatigue Clinic (YFC). They just provide a service to ensure you understand and can pace etc. They are a funded NHS service.

I last saw their G.P. and discussed current research in the M.E field. She was unaware of OMF, Prusty, and any of what I think of as the current researches providing hope etc.

The G.P's letter to my G.P. confirming M.E. was used in my claim for disabilities, which where successful.

I'm in a local M.E. group, the majority have been to the YFC and all speak highly of Sue Pemberton and the service.

 

[livinglighter]

Thanks, @Treeman I was going to PM you and @Pyrrhus, but I'll continue the conversation here in case anyone else finds the information useful.

@Treeman, did you meet their visiting G.P Vikki McKeever, and she didn't assess for any co-morbid conditions such as POTS based on your symptoms? Because that's what I asked if the service has the capacity to do, and they confirmed I do not necessarily have to see the doctor as the therapists have the capacity to do that. I've already had a similar experience at Royal Free Hospital where ME/CFS was partly explained via dysregulation but no investigative work or prescribing was carried out.

@Pyrrhus, I believe the therapy they employ is on the basis that in the absence of treatment for ME/CFS it's used as a supportive tool to increase regulation of the nervous system which is stuck in "fight or flight" mode. However, if you are saying autonomic dysfunction AKA dysautonomia is not merely defined as "fight or flight" I'm not understanding how the dysregulation theory is useful for pwME with autonomic dysfunction.

 

[livinglighter]

No one cares about us. They never did. Covid wont change that.

Just a mere observation of what is likely to be the case of the same help being provided for pwME without the link officially made.

 

[Treeman]

Hi, I did see Dr McKeever (2019). I also saw an occupational therapist (2017) who was quite young, fairly new to the service and building experience. I felt the occupational therapist never explained things clearly to me and was left felling unsatisfied. The experience with Dr McKeever was much better.

In my case there was an interview only. They do ask about health conditions that included co-morbid but do not carry out any testing, They are a consulting type service only. They offer practical advice on managing your symptoms so you never experience a crash, which was funny as the interview its self caused a crash!

 

[Rufous McKinney]

I last saw their G.P. and discussed current research in the M.E field. She was unaware of OMF, Prusty, and any of what I think of as the current researches providing hope etc.

Its impossible to process that this is true.